~ Me & My Heart ~

Hello,

I've been thinking for a while that I should include a page on this blog that's more personal to me, about my congenital heart defect. In the About page I have focused on telling you about the business and only touched on my health issues, so I thought I would dedicated a page to explaining my heart condition in a little more detail. Whether I like it or not it's a major part of my life and who I am, but it's not all of me.......definitely not all of me!

I was born in 1976 with a serious and complex congenital heart defect (congenital meaning you are born with your defect, rather than heart disease developing later in life). There are many different types of heart defects that babies can be born with, some not as complex as others. My particular congenital heart defect (CHD) is known as Tricuspid Atresia. My tricuspid valve is abnormally formed, almost non-existent and my right ventricle is what's known as a Hypoplastic right ventricle, meaning it's not properly formed and is tiny. There are also numerous other issues including a couple of holes in my heart. As I only have one working ventricle I'm known as a single ventricle patient which in basic non medical jargon is like saying only half of my heart works. My CHD falls in to the category of cyanotic heart defects which means I don't get a good blood flow to my lungs to become oxygenated so my blood Oxygen levels are low. This obviously means getting short of breath easily on exercise and often having a blueish appearance to my skin, which shows in my fingers, cheeks and lips in particular . In my mid twenties I was also told I had developed Pulmonary Hypertension with my CHD, so because of that my oxygen levels are dropping even more rapidly nowadays and fall ridiculously low on any kind of exercise (and by exercise I mean anything where I'm not just sitting on my backside doing nothing!) Even talking lowers it, ha!  

I had my first lot of heart surgery when I was about two and a half weeks old, and then had open heart surgery when I was seven years old. As an adult I've had countless other smaller surgical procedures to help with my arrhythmias (heart rhythm problems) and I'm on lots of medication to try to keep things stable. I've also suffered three TIA's in my early twenties, they are like a mini stroke, so I'm also on blood thinners to hopefully prevent further clots. I'm seen for tests and consultations every few months at the Royal Brompton Heart & Lung hospital in London, where my amazing teams of specialists take great care of me and do the most incredible job!

So that's my CHD in a very basic nutshell! I thought I would just keep it about my condition on this page, like an introduction, but I will over time do the odd blog post about different aspects of living with a CHD and how it impacts on my life, my family and my work. This may not be interesting to everyone but I thought it may be helpful to others living with similar conditions or other long term illnesses and disabilities. I have felt for some time that I was neglecting this part of my life on my blog, not because I wanted to hide it, not at all, but more because I wasn't sure if it fitted in. This blog was always meant to be a look behind the scenes of my little business and my life and I wasn't sure where to fit my health in to that. I now see that it is part of me and my life and even part of my business, it is after all why I decided to set up my business, so that I could work for myself from home to better accommodate my health needs. It's part of my journey and hopefully shows that despite having to compromise and adapt, you can still have dreams and goals, and many can still be reached!
 


Many thanks for stopping by and reading!

Much love,

Tanya x


2 comments:

  1. Hi Tanya.
    I too have tricuspid atresia, pulmonary atresia, transposition of great arteries and am a single ventricle.
    I will be 50 in November, am married & have 2 children.
    This is a lovely website and I shall be returning to it.
    Donna

    Ps I blog at lifeandotherstoriesblog.wordpress.com


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    Replies
    1. Hi Donna,
      Thank you so much for your message, sorry it's taken me so long to reply but I've been in hospital. It's nice to meet a fellow Tricuspid Atresia patient. I hope you are keeping well. Thanks so much for the kind comments about my blog and website! I'm off to check out your blog now!
      Take care.

      Best wishes,
      Tanya

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